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Member Resources

All of our member programs are designed to strengthen your organization and increase your capacity to serve your patients and families, educate medical professionals, and bring awareness to the general public. We are committed to helping your organization evolve and thrive through the many programs and services offered below. If you are not currently a member view the benefits and apply today.

Capacity-Building and Educational Webinars

Every month NORD hosts webinars to provide education on topics like advancing research, securing an ICD-10 code, continuing medical education, and more. We also bring expert speakers and fellow rare disease executive directors to speak on capacity-building webinars on topics like Board governance, fundraising, and working with a medical advisory board. Past topics:

Capacity-Building and Educational Webinars

View More

View the complete list of past webinars and calls here.

Promote your programs

NORD can help you promote all of your great work and available services through our communications channels. To help you do this, we are able to share information related to the following:

Get Social!

You can become a guest blogger on our blog and promote your upcoming events and campaigns on our social media sites! Contact your membership manager today for more information!

Capacity-Building and Leadership Resources

We offer toolkits and articles, capacity building workshops and webinars related to best practices from across the community. While some of these resources are free, the full range of our services and programs are only available to NORD members.

The following materials are provided to help leaders of patient groups build and grow their organizations:

Other Types of Guidance

NORD also provides strategic guidance related to:

  • Virtual events, conferences and fundraising
  • Website content
  • Social media marketing
  • Events fundraising
  • Grant research and writing
  • Board governance and expectations
  • Financial and legal filings
  • Patient and caregiver resources
  • Physician resources

NORD's Natural History Study Project

To address the special needs of those developing treatments for rare diseases, NORD has created a Natural Histories Patient Registry Platform, with extensive input from FDA and NIH. The first disease-specific registry was launched in the summer of 2014 with the VHL Alliance. In 2015, NORD was awarded with a $250,000 grant to develop more registries to support better understanding of rare diseases and the research and drug development processes.